Family carers’ experiences of nutritional care for people living with dementia at home: An interpretative phenomenological analysis

OBJECTIVES: Few studies have captured the experiences of family carers who manage the nutritional needs of family members living with dementia at home. The identification and management of symptoms that may affect nutritional status is often reliant upon the family carer. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of the family members who support them. METHOD: Semi-structured interviews were conducted between October 2017 and February 2018. Participants were also asked to keep a diary of experiences for two weeks before the interview. An Interpretative Phenomenological Analysis approach was used throughout. Findings: Eight participants, with a mean age of 69.6 years residing in South West England were recruited and represented a range of familial roles. Following analysis, three superordinate themes were identified: ‘becoming carer and cook’, ‘changing role and relationships’ and ‘emotional eating’. CONCLUSION: Family carers make food and drink decisions daily, and feel a duty to take on the responsibility for food shopping and cooking. They are conscious about ‘doing the right thing’ when it comes to providing nutritional care, and some feel uncertain about the food choices they are making, particularly regarding a reliance on convenience foods. Changes in appetite, food preferences and mealtime habits related to dementia can lead to disruption affecting the dyad. It is important that family carers and people living at home with dementia are provided with adequate support regarding identifying nutritional risks, making appropriate food and drink choices and preventing the risk of malnutrition in the dyad.